Does anyone know what causes the benign intercrania hypertension? I have been told it could be the pill, which I no longer take and being overweight, I am 10st 12lbs and 5ft 3".
Thanks
Thanks
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For about the last month or so I have been having a lot of pressure in my head. I have been trying to research what this could be. Its not painful just very uncomfortable and annoying. I feel the pressure throughout my entire head, behind my eyes, on my ears. My vision is weird when this is happening also. I can see but there is just this strange thing that I can see in my vision field. I have read that some people have this with atypical migraines or with hypertension.
When sufferers of Benign Intracranial Hypertension have their symptoms do they come and go like mine, or are they a constant thing? I have also noticed that mine start when I am stressed out about something.
I am also a little overweight also and I have read that could be an issue with BIH.
I am also wondering if having an epidural could trigger this. With my last child the tech who administered my epidural slipped up and gave me a spinal tap instead.
If anyone has any advice it would be greatly appreciated. This has been making me very nervous!
When sufferers of Benign Intracranial Hypertension have their symptoms do they come and go like mine, or are they a constant thing? I have also noticed that mine start when I am stressed out about something.
I am also a little overweight also and I have read that could be an issue with BIH.
I am also wondering if having an epidural could trigger this. With my last child the tech who administered my epidural slipped up and gave me a spinal tap instead.
If anyone has any advice it would be greatly appreciated. This has been making me very nervous!
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Emily - Much like most mechanical things that get placed into the body they have a limited life. However, I was told although they should last 5 years some people last for alot longer 15 years +. Others like those you have read about need changing sooner.
The first 9 - 12 months is the most critical time for any LP shunt as it is the settling in period, after this time body tissue has started to grow around it and it will be in a more fixed position. Therefore it is less likely to move around and dislodge itself. However, blockage is a common problem.
Unless you are experiencing regular BIH headaches, visual disturbances or other symptoms then you have nothing to worry about... However, if you are concerned you can discuss this with your GP. Get them to check your eyes and see if they can see any swelling on your optic discs, this is an indicator of raised intracranial pressure.
To the last post (guest), have you been to see a GP? As, what you are describing to me doesnt sound like BIH. More like an atypical migraine. However, it is always best to be checked over properly. BIH headaches are chronic, you get up with them, you go to bed with them. They are worse on bending, coughing or straining. They can cause visual disturbance as a result of compression of the optic nerve.
Also, one thing that you mention that they are usually stress related means they are unlikely to be BIH... the best thing to do would be to go and see your GP and stop worrying about things you read on the internet. (Sorry! As well as being a BIH sufferer i am a final year medical student which means i have the bonus of seeing both sides of this).
Im not sure who asked, but at the moment there is no firm idea about what causes BIH. However, it is thought that hormonal based drugs eg. the pill or steriods can cause blockage in the reabsorption of CSF or cause its over production. That is why they make you stop taking the pill. Weight for similar reasons may not help BIH, as fat is a site of oestrogen production. And excess fat may be a reason for high levels of oestrogen which may add to the problems mentioned above... However, these are just theories that have been suggested.
Hope this helps!
The first 9 - 12 months is the most critical time for any LP shunt as it is the settling in period, after this time body tissue has started to grow around it and it will be in a more fixed position. Therefore it is less likely to move around and dislodge itself. However, blockage is a common problem.
Unless you are experiencing regular BIH headaches, visual disturbances or other symptoms then you have nothing to worry about... However, if you are concerned you can discuss this with your GP. Get them to check your eyes and see if they can see any swelling on your optic discs, this is an indicator of raised intracranial pressure.
To the last post (guest), have you been to see a GP? As, what you are describing to me doesnt sound like BIH. More like an atypical migraine. However, it is always best to be checked over properly. BIH headaches are chronic, you get up with them, you go to bed with them. They are worse on bending, coughing or straining. They can cause visual disturbance as a result of compression of the optic nerve.
Also, one thing that you mention that they are usually stress related means they are unlikely to be BIH... the best thing to do would be to go and see your GP and stop worrying about things you read on the internet. (Sorry! As well as being a BIH sufferer i am a final year medical student which means i have the bonus of seeing both sides of this).
Im not sure who asked, but at the moment there is no firm idea about what causes BIH. However, it is thought that hormonal based drugs eg. the pill or steriods can cause blockage in the reabsorption of CSF or cause its over production. That is why they make you stop taking the pill. Weight for similar reasons may not help BIH, as fat is a site of oestrogen production. And excess fat may be a reason for high levels of oestrogen which may add to the problems mentioned above... However, these are just theories that have been suggested.
Hope this helps!
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I have a LP Shunt to that horizontal valve is a SIPHONGUARD® Anti-Siphon and Flow-Control Device made by codman
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hi i was diagnosed with inter cranial hypertension about a month ago and they have put me on medication for it but the medication is giving me tingling in my feet and hands and cramps in my legs .i have had two lumbar punctures and am going for my third in February i have a three year old son and some days don't want to get out of bed i am so low i don't know what to do can anyone help
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hi, my dad also having trouble with his shunt we also don't know where to turn , we feel there is no after care when you return home. my dad had a shunt fitted about 15 weeks ago and had headache and nausea soon after ; it's taken them a while' but he's just had it revised(all new put in) it is 11 days since that was done and he is terrible he's lost partial use in arms can;t dress or wash hisself very unstable on his legs and severe pain in his spine, none of which we had with the first but we don't know if this is normal we get told if we're concerned go to a and e which ours in staffordshire is shocking with anything from 6 to 11 hour wait. would be interesed to hear from you again to see if your problems have improved.
we know how you are feeling and wish you all the best mandy(keep you chin up)
we know how you are feeling and wish you all the best mandy(keep you chin up)
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Hi All
I thought I would give you an account of all my experience with Benign Intracranial Hypertension.
I have had the condition for ten years or rather i was diagnosed 10 years ago (I was about 21years), according to neurologists the majority of people with this condition control it with drugs and/or the occassional lumbar puncture.
The condition is caused by a chemical imbalance in the body but nobody knows exactly what causes the chemical imbalance or which out of the millions of chemicals in the body are out of balance, The pill or hormonal treatments are considered a contributing factor to the condition and I was told I would never be able to use hormone based drugs such as the pill again.
To the lady who asked about her weight being a contributing factor, it is considered a possibility that being overweight does not help but i think this is a general health warning rather than specifc to the condition as when i was diagnosed with BIH at 5'9" and 9st 2lb I was over 1st 8lb underweight, however after being diagnosed with the condition and my symptoms rapidly becoming more aggressive I did put on 6 stone in the space of 8-10 weeks. I was put on drugs to reduce the fluid retention in my brain and I dropped 3 and a half stone in a few weeks. Between diagnosis and referral for a LP Shunt was a total of 6 months and I underwent 3 Lumbar punctures during that time but each time they reduced the fluid level back to 10cmH2O it made the condition behave more aggressively, in that it took an even shorter time for the fluid levels to become even higher than the previous fluid level before dropping it to 10cmH20.
It was 6-7 weeks between my neurologist deciding i would need an LP Shunt and the first shunt being fitted, at the point of the first shunt operation my pressure had become so high that when they put the shunt into my spin it shot back out again and fluid leaked out, I lost a lot of fluid and this hindered my recovery severely, it caused severe dizziness, headaches and vomitting, which pulled on my stitches something chronic.
It took about 6 weeks for me to recover but the LP Shunt sat uncomfortably out of my spin causing lower back pain, i also got pain in the peroteneal cavity and within 6 months i had to have a revision to the shunt as not only had my body tissue grown around the shunt too tightly strangling it effectively but it had also grown up inside it.
I still have my second shunt and it is expected to last me for life (as i understand it you are only expected to need it revising if you are still growing), unless it moves or I get a severe blockage. The LP Shunt I have has two valves to help reduce dizziness and visual distortions when moving from a seated position to standing. It has relieved my visual and neurological symptoms (even with a shunt she or you may stil suffer blackouts) in the main but I do get minor blockages, sometimes these will resolve themselves but occassionally the shunt might need to be flushed, I get pins and needles at the exit point of the shunt into the peroteneal cavity, doing sit-ups can be painful sometimes as the shunt feels like it's stabbing you at the front and pulling at the back, and I often suffer with lower back pain due to the LP Shunt but I am so much better off with it than without it!
I will add two points to this, what your daughter is going through is terrifying and disorientating, the pain she feels in her head is so much worse than you can imagine, it makes a migraine seem like a slight headache, she'll need a lot of support through the treatments and the recovery.
Secondly, my aunt has a similar condition, her condition was diagnosed rather late and some of the damage was irreversible, she originally had a LP Shunt fitted but it caused severe nausea and dizziness, according to the comments from her team of specialists the LP Shunt didn't work for her as the pressure built up over longer periods of time than in me and not to the same level, they revised her shunt with one that goes in the neck region and this worked much better for her type of fluid build up, so you may want to discuss this option with your consultant.
BIH is a rare condition and is barely understood by specialists or consultants, as far as I can tell some consultants act like the shunt is the cure and you will never have any problems with the LP Shunt but honestly the best consultants i have had are the ones that told me no one really knows much about or understands the condition that well, and any treatment for it should be taken a day at time. i.e. don't expect too much
I thought I would give you an account of all my experience with Benign Intracranial Hypertension.
I have had the condition for ten years or rather i was diagnosed 10 years ago (I was about 21years), according to neurologists the majority of people with this condition control it with drugs and/or the occassional lumbar puncture.
The condition is caused by a chemical imbalance in the body but nobody knows exactly what causes the chemical imbalance or which out of the millions of chemicals in the body are out of balance, The pill or hormonal treatments are considered a contributing factor to the condition and I was told I would never be able to use hormone based drugs such as the pill again.
To the lady who asked about her weight being a contributing factor, it is considered a possibility that being overweight does not help but i think this is a general health warning rather than specifc to the condition as when i was diagnosed with BIH at 5'9" and 9st 2lb I was over 1st 8lb underweight, however after being diagnosed with the condition and my symptoms rapidly becoming more aggressive I did put on 6 stone in the space of 8-10 weeks. I was put on drugs to reduce the fluid retention in my brain and I dropped 3 and a half stone in a few weeks. Between diagnosis and referral for a LP Shunt was a total of 6 months and I underwent 3 Lumbar punctures during that time but each time they reduced the fluid level back to 10cmH2O it made the condition behave more aggressively, in that it took an even shorter time for the fluid levels to become even higher than the previous fluid level before dropping it to 10cmH20.
It was 6-7 weeks between my neurologist deciding i would need an LP Shunt and the first shunt being fitted, at the point of the first shunt operation my pressure had become so high that when they put the shunt into my spin it shot back out again and fluid leaked out, I lost a lot of fluid and this hindered my recovery severely, it caused severe dizziness, headaches and vomitting, which pulled on my stitches something chronic.
It took about 6 weeks for me to recover but the LP Shunt sat uncomfortably out of my spin causing lower back pain, i also got pain in the peroteneal cavity and within 6 months i had to have a revision to the shunt as not only had my body tissue grown around the shunt too tightly strangling it effectively but it had also grown up inside it.
I still have my second shunt and it is expected to last me for life (as i understand it you are only expected to need it revising if you are still growing), unless it moves or I get a severe blockage. The LP Shunt I have has two valves to help reduce dizziness and visual distortions when moving from a seated position to standing. It has relieved my visual and neurological symptoms (even with a shunt she or you may stil suffer blackouts) in the main but I do get minor blockages, sometimes these will resolve themselves but occassionally the shunt might need to be flushed, I get pins and needles at the exit point of the shunt into the peroteneal cavity, doing sit-ups can be painful sometimes as the shunt feels like it's stabbing you at the front and pulling at the back, and I often suffer with lower back pain due to the LP Shunt but I am so much better off with it than without it!
I will add two points to this, what your daughter is going through is terrifying and disorientating, the pain she feels in her head is so much worse than you can imagine, it makes a migraine seem like a slight headache, she'll need a lot of support through the treatments and the recovery.
Secondly, my aunt has a similar condition, her condition was diagnosed rather late and some of the damage was irreversible, she originally had a LP Shunt fitted but it caused severe nausea and dizziness, according to the comments from her team of specialists the LP Shunt didn't work for her as the pressure built up over longer periods of time than in me and not to the same level, they revised her shunt with one that goes in the neck region and this worked much better for her type of fluid build up, so you may want to discuss this option with your consultant.
BIH is a rare condition and is barely understood by specialists or consultants, as far as I can tell some consultants act like the shunt is the cure and you will never have any problems with the LP Shunt but honestly the best consultants i have had are the ones that told me no one really knows much about or understands the condition that well, and any treatment for it should be taken a day at time. i.e. don't expect too much
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I was motoring around the internet searches for pseudotumor cerebri when I came upon this site. It surprises me there are so many people afflicted with this ailment. I was also surprised to find it's now named Ididopathic (or Secondary) Intracranial Hypertension.
The reason I was looking for info on IIH is this: In 1993 I was diagnosed with pseudotumor, but only after alot of misdiagnosing by a family doctor (virus, pulled muscles in neck, sinus infection, etc.). It presented itself with frequent headaches---which really had been ongoing for a year---then worsening headaches, then positional headache, upon lying flat and bending. Then, a sensation of pressure in the eyes, pulsating in the ears, stiff, hurting neck, limited mobility of the neck and vision problems. The vision trouble started with what I can only explain as "rings" in my vision, as if I were looking through ring shapes around my irises. Anyone had anything similar to that? I recall the doctors couldn't understand what I meant by that. I then progressed to double vision for a couple of days; the family doc referred me to an opthalmologist who found I had severe pressure on the optic nerve; he sent me back to the family doc (after he personally contacted him and chewed him out for brushing me off!). Luckily, the family doc left the office and another doc examined me and within a couple of minutes declared he was sure he knew this was pseudotumor cerebri. He then sent me to a neurologist who agreed. Then, the spinal taps. Oy. I had maybe 8 of these over a couple months time. Cannot imagine undergoing the dozens some have endured. These offered temporary relief, but the vision problems remained. The double vision left, but I still had vision problems, enlarged blind spots and a "ring" in the vision. Also, I had oval shaped, blurry patches in the outside of the vision field. I still have it faintly in the left eye, sometimes it is nearly nonexistent. I was prescribed Lasix, Diamox, and an amphetimine to help with weight loss (would not recommend that to anyone).
After I researched this at the nursing college library, I found I could have an lp shunt placed and it would likely reverse all of the symptoms. Up until then, the neurologist was talking of fenestration of the optic nerve. I did not want any part of that! Thankfully, a neurosurgeon placed the shunt and I've not had a serious problem with it since and it did reverse the symptoms right away. I recall I was discharged from the hospital within 24 hours (no insurance then) and had horrible headaches from spinal fluid pressure being too low, but that resolved over a few days.
During the last 3 weeks, I've begun to have headaches regularly. Many occur during the night and will get better after I get up for awhile. Sometimes they occur during the day. Tylenol and Motrin help, but do not get rid of them altogether. I am guessing something is wonky with my shunt, but I've also gained some weight over the month (am overweight to begin with). I had been taking tetracycline to treat a stomach ulcer. Am wondering if that could've triggered the headaches; seems to coincide.
I've gotten longwinded here; sorry! The question I have for anyone who has had a blocked lp shunt, how did the doctors determine it was blocked. Aside from the symptoms, is there some kind of testing they can do to prove it is blocked? My shunt is 16 years old, downright ancient! But I've not had any problems with it. I had a surgery for another matter in 2007, in which I was on a surgery table that was gouging into the reservoir of the shunt. I notified the nurse of this and the anesthesiologist replied, "You'll be asleep and won't feel it anyway." And with that, I was out cold! Two days afterward, I had a positional headache that was quite bad. My release was delayed so I could be looked at by a neurologist. He said it could not be a problem with the shunt as it was so old, there was no way it could still be working. I informed him my surgeon said they indeed saw it was working, seeping fluid into the peritoneal cavity. They found this after thinking they'd knicked my bladder! They were relieved to see the shunt. So, the doctor was amazed it was functioning. Now, I wonder if somethings amuck and would welcome anyones reply. By the way, I had zero followup. The neurosurgeon and neurologist were not interested. I went on my own to a neurologist about 6 years ago, just to have some kind of followup. At that time, there was nothing to cause any concern. Now, I'm concerned. I am 40 now and was hoping to go happily into the sunset with this shunt.
Again, I welcome anyone's reply.
The reason I was looking for info on IIH is this: In 1993 I was diagnosed with pseudotumor, but only after alot of misdiagnosing by a family doctor (virus, pulled muscles in neck, sinus infection, etc.). It presented itself with frequent headaches---which really had been ongoing for a year---then worsening headaches, then positional headache, upon lying flat and bending. Then, a sensation of pressure in the eyes, pulsating in the ears, stiff, hurting neck, limited mobility of the neck and vision problems. The vision trouble started with what I can only explain as "rings" in my vision, as if I were looking through ring shapes around my irises. Anyone had anything similar to that? I recall the doctors couldn't understand what I meant by that. I then progressed to double vision for a couple of days; the family doc referred me to an opthalmologist who found I had severe pressure on the optic nerve; he sent me back to the family doc (after he personally contacted him and chewed him out for brushing me off!). Luckily, the family doc left the office and another doc examined me and within a couple of minutes declared he was sure he knew this was pseudotumor cerebri. He then sent me to a neurologist who agreed. Then, the spinal taps. Oy. I had maybe 8 of these over a couple months time. Cannot imagine undergoing the dozens some have endured. These offered temporary relief, but the vision problems remained. The double vision left, but I still had vision problems, enlarged blind spots and a "ring" in the vision. Also, I had oval shaped, blurry patches in the outside of the vision field. I still have it faintly in the left eye, sometimes it is nearly nonexistent. I was prescribed Lasix, Diamox, and an amphetimine to help with weight loss (would not recommend that to anyone).
After I researched this at the nursing college library, I found I could have an lp shunt placed and it would likely reverse all of the symptoms. Up until then, the neurologist was talking of fenestration of the optic nerve. I did not want any part of that! Thankfully, a neurosurgeon placed the shunt and I've not had a serious problem with it since and it did reverse the symptoms right away. I recall I was discharged from the hospital within 24 hours (no insurance then) and had horrible headaches from spinal fluid pressure being too low, but that resolved over a few days.
During the last 3 weeks, I've begun to have headaches regularly. Many occur during the night and will get better after I get up for awhile. Sometimes they occur during the day. Tylenol and Motrin help, but do not get rid of them altogether. I am guessing something is wonky with my shunt, but I've also gained some weight over the month (am overweight to begin with). I had been taking tetracycline to treat a stomach ulcer. Am wondering if that could've triggered the headaches; seems to coincide.
I've gotten longwinded here; sorry! The question I have for anyone who has had a blocked lp shunt, how did the doctors determine it was blocked. Aside from the symptoms, is there some kind of testing they can do to prove it is blocked? My shunt is 16 years old, downright ancient! But I've not had any problems with it. I had a surgery for another matter in 2007, in which I was on a surgery table that was gouging into the reservoir of the shunt. I notified the nurse of this and the anesthesiologist replied, "You'll be asleep and won't feel it anyway." And with that, I was out cold! Two days afterward, I had a positional headache that was quite bad. My release was delayed so I could be looked at by a neurologist. He said it could not be a problem with the shunt as it was so old, there was no way it could still be working. I informed him my surgeon said they indeed saw it was working, seeping fluid into the peritoneal cavity. They found this after thinking they'd knicked my bladder! They were relieved to see the shunt. So, the doctor was amazed it was functioning. Now, I wonder if somethings amuck and would welcome anyones reply. By the way, I had zero followup. The neurosurgeon and neurologist were not interested. I went on my own to a neurologist about 6 years ago, just to have some kind of followup. At that time, there was nothing to cause any concern. Now, I'm concerned. I am 40 now and was hoping to go happily into the sunset with this shunt.
Again, I welcome anyone's reply.
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I thought I was the only one too! I was diagnosed march of 2007 with idiopathic intracranial hypertension. I suffered from the headaches for years.never knowing when it would be a "bad day". when I couldn't go to work, classes, or anything because all I could do was sit in a dark room popping Advil, squeezing my temples, crying because the pain wouldn't let me go sleep and escape it, and all I wanted was to pluck my eyeballs out of my head to stop the throbbing. But no one knows what you're experiencing, and they assume you must be over exaggerating. So, they want you to suck it up and get on with it. So that's what I did. Until my nerves down my neck, shoulders, arms, and eventually back were pinched off and everything was either in some variety of completely on fire with pain or felt like it was dead. So I went to the emergency room. They treated me like some drug addict looking for a fix, with all my "imaginary" problems including double-vision. They shot me full of steroids and pain meds, that left me throwing up violently for days until I got to my family doc. Who then in turn pumped me full of the same drugs for a weeks time, not treating or checking my double-vision and blurry eyesight. At the end of that week I was not able to see my own hand because everything was graying out of vision. Doc had finally decided to schedule me for pain management classes( IE how to live your life in pain)andalso referred me to an opthamologist The eye doc saved my life! he looked into back of my eyes and rushed me to the emergency room skipping all the triage bs and got me straight to surgery. They told me I would've died that night from stroke or aneurysm because the pressure was so high. You know its bad when the doc does the spinal tap to see what the pressure is, and when it shot out over the top of the thing he yells "WOW" then went to get every doc on the floor to come see how high it was. They put a lumbar shunt in me after a week in the hospital. Since then I rarely have headaches, I got all the feeling back in my arms and fingers, pain stopped everywhere else, and most importantly and most amazingly I got all of my vision back and my eyes uncrossed! There IS power in prayer!!!!And I am thankful everyday for those incredible doctors that cared for me. The shunt allowed me to have a functioning and much much more happier life. I hope noone else ignores the symptoms and pain as long as I did, because you don't have to go blind to get diagnosed. All of us need to get the awareness out there about our disorders because there's no telling how many people could be saved years of agony just by letting them know they're not alone!
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I am 43 years old and was diagnosed with pseudo tomor ceribri after having 2 cranioectomies for Arnold Chiari Malformation this is when the tonsils of your brain fall through the farumen magnum(the opening in you skull for your spinal colume) and they get compressed there. This happened to me twice, I had a right sided suboccipital cranioectomy in 2004 and in 2006 a left sided for the same reason. For a few months after the second surgery contined with headaches, blurred vision, and nausea. I went to my Neurologist and hed checked my eyes and said I had papiledema, and sent me for a lumbar puncture. After everything else I went through now I was diagnosed with pseudotumor ceribri, I was producing too much cerebral spinal fluid and it was not circulating well. I was put on several different medications but nothing worked finally I was told I needed a Lumbar Peritonial Shunt. The shunt was placed in June, in July I woke up with sever pains on my right side and was adviced to go to the ER they did a CT scan and said that the shunt came out of place and was poking my liver, I had surgery to reposition the shunt. Later that same month I was working and felt like someone hit me on the head and I got a severe headache I called the Nuerologist and he sent me for a spinal tap, which showed the pressure was high. the shunt was clogged, back to the OR, as bad as it sounds,everything got better after that surgery in 2006 I have not had problens with my shunt.
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Hello,
I am 42 and i was diagnosed with PTC in 1995. It came on quick and unfortuantely i did lose some vision. However, I chose to have optic nerve fenestrations in Seattle and have done very well with them. My eyes stablilized and I have MRIs every year. Even though i sometimes feel like my head is full its goes away quickly and everything seems okay. I am followed closely with a neurologist. I chose not to have to LP shunts, so everyone is different. The n/t of the hand and feet is from the diamox that they put you on. Make sure to let your doc know that. It is a common side effect as well as metal taste when drinking carb beverages. ....Crista in Vancouver Washington...
I am 42 and i was diagnosed with PTC in 1995. It came on quick and unfortuantely i did lose some vision. However, I chose to have optic nerve fenestrations in Seattle and have done very well with them. My eyes stablilized and I have MRIs every year. Even though i sometimes feel like my head is full its goes away quickly and everything seems okay. I am followed closely with a neurologist. I chose not to have to LP shunts, so everyone is different. The n/t of the hand and feet is from the diamox that they put you on. Make sure to let your doc know that. It is a common side effect as well as metal taste when drinking carb beverages. ....Crista in Vancouver Washington...
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My daughter is 9. shes not overweight and has suffered from this condition for a while now. she was fitted with a shunt in april this year as several lp didnt help. I have just been told that she has again got pressure build up and at my wits end awaiting on her being called back into hospital not knowing what will be done next, she has had 3 headaches today and been very sick her sight is also suffering and just dont know whats next for her and getting so fed up thinking a big operation like a shunt should have been the end to her suffering.
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I have IH. If I were you, I would want my daughter to get a VP shunt instead of an LP. Most doctors try Lp's first, but they hurt to have in and there is a extremely high risk she will develop Chiari Malformation (google it, it is horrible to have)
A shunt is almost always necessary, and if done right they help. The most likely will have to do multiple surgeries to find the right kind of valve, insist on getting a programable one no matter LP or VP, Programmable LPs just got FDA approved so the surgeon may not be familiar with them. PLEASE for your daughter, get one, they are much easier and she wouldn't have to have MANY many surgeries to find the right setting.
I wish you both LOTS of luck and I hope she does well.
You might want to try joining a awareness group on facebook, it's nice to know people with similar problems and they can give good advice. :-D
A shunt is almost always necessary, and if done right they help. The most likely will have to do multiple surgeries to find the right kind of valve, insist on getting a programable one no matter LP or VP, Programmable LPs just got FDA approved so the surgeon may not be familiar with them. PLEASE for your daughter, get one, they are much easier and she wouldn't have to have MANY many surgeries to find the right setting.
I wish you both LOTS of luck and I hope she does well.
You might want to try joining a awareness group on facebook, it's nice to know people with similar problems and they can give good advice. :-D
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Hi ive had this condition since 1999 now and ive had so many lumber punchures over the years, and last week i had a bad bout of headaches blurred vision again and was in hospital for a week. The doctors have changed my meds yet again and they are now thinking about putting a shunt in.I had 1 normal lumber punchure and 2 xray guided lumber punchures and they finally drained the fluid which was high which is why they are considering this shunt i am all for this if it is going to make me better as i have been suffering for all these years .I am over weight and have been trying to loose it but it easier said than done and as im getting older its getting harder i will be 32 this year and i should be enjoying life
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my daughter is 12 years old she and got BIH, she has had 2 LPs and told she might have to have a shunt, but first they might drill a whole in head with tube hanging out first to test something which i think its the pressure, but then do the shunt if its to bad they have now said hers eyes look better but she is still suffering from headaches and complaining that her eyes are hurting her, they have also gone blurry which i no is not good but they where going to do another LP, but they want to see if its side effects from other tablets has anybody else had the same problem with there eyes hurting from BIH. she is also on tablets for this and potassium citrate due to her bloods gone acidic due to her tablets. :-(
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